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Tico14
Tico14 CSN Member Posts: 71 Member

After several blood, etc., tests the Hema/Onc NP sent me a message which I have yet to understand, i.e., diagnostic considerations include marginal zone lymphoma, lymphoplasmacytic lymphoma or CD5-negative B-cell lymphoproliferative disorders.

Well, that's as clear as mud.

She did say, after I called her, that I most likely have lymphoma and it may be indolent, but they want to do a contrast CT and get some more blood work completed first.

What does it look like to you - I'm tired of relying on Dr. Google.

Thank you.

Comments

  • Tico14
    Tico14 CSN Member Posts: 71 Member

    Received a call from the hospital yesterday, they've got me scheduled for a CT-PAP w/contrast in early April.

  • Tico14
    Tico14 CSN Member Posts: 71 Member

    typo…CAP! Not PAP.

  • tom1953
    tom1953 CSN Member Posts: 29 Member

    The CT CAP should make things clear. Though, according to DR Google, it's generally indolent and low grade.

  • po18guy
    po18guy CSN Member Posts: 1,572 Member

    Are you symptomatic? If so, a scan will likely reveal a node or mass than can be biopsied, as that is the only way in which a diagnosis may be settled. Generally, if it is an aggressive malignancy, the symptoms will arrive fairly quickly and become more pronounced in a short period of time.

  • Tico14
    Tico14 CSN Member Posts: 71 Member

    Tom1954 & po18guy,

    Thank you both for your replies. CT CAP is scheduled for early April. I have no overt symptoms beyond fatigue and itching, either of which I can attribute to any number of things.

  • Tico14
    Tico14 CSN Member Posts: 71 Member
  • po18guy
    po18guy CSN Member Posts: 1,572 Member

    At this point, it is good to remember that no scan or blood test can diagnose cancer. Only a pathological examination of a tissue biopsy can rule malignancy in or out. Hematology opinions may be right or wrong, as each case is unique. They proceed according with the pathology report - which may return quickly, or take some time in a borderline case.

  • tom1953
    tom1953 CSN Member Posts: 29 Member

    Good point. Sometimes it takes more than one biopsy. I had three. Two needle and one surgical.

  • po18guy
    po18guy CSN Member Posts: 1,572 Member

    Needle biopsies 'can' be good, but are often of little value, and even yield false negative results. What needle biopsies are is quick and cheap, relatively speaking. They extract a very small sample of the lymph node and may miss any malignant cells present. I have had only one fine needle aspiration - which, due to a misunderstanding of doctor's orders I was not supposed to have. It was ultimately very painful and useless, being of an inguinal node so deep that they could not anesthetize all of it.

    The problem is that enlarged lymph nodes may not be completely filled with malignant cells. Thus the needle risks missing the malignant cells and sampling only normal lymphatic tissue. As to nodes, a rough analogy is to think of lymph nodes like an orange, which has skin, segments, a stem and seeds - there is an internal structure. Suppose you peel an orange and find none of that, but only a mass of clay. That is what lymphoma cells eventually do to a lymph node.

    Lymphoma cells will totally efface the internal architecture of the lymph node - as in the orange filled with clay. Thus, it is far better to excise the entire node so that it may be dissected by the pathologist. They can examine the entire node and remove cells which appear abnormal for further examination.

  • tom1953
    tom1953 CSN Member Posts: 29 Member

    In my case the first biopsy was inconclusive. The report recommended a second biopsy. The second, a bone marrow biopsy confirmed lymphoma, but not the subset. The surgical biopsy confirmed NHL, DLBCL.

  • Tico14
    Tico14 CSN Member Posts: 71 Member

    Thanks to all who have responded. My CT CAP isn't for another week yet and then we'll see what's going on I assume. I am not looking forward to a biopsy of any kind but based on what I've read here, I'm going to go the surgical route assuming I have a choice with the VA. I can always go private, but the VA is the one that got me this far so I'll go with them until they tell me I can't have a biopsy with them other than a needle. Given that I have little symptoms (other than blood tests that point toward lymphoma or MM) surgery would be the better choice for me. Thanks again.

  • tom1953
    tom1953 CSN Member Posts: 29 Member

    I started out at the VA as well, though the VA clinic in my area did not have much in the way of oncologists at the time. They forwarded me to private through the Community Care Act. In any case, whether with the VA or private, if you need a biopsy, they will likely start with a needle biopsy as surgical is more expensive. Though you will not know until you get to that point. I hope all goes well for you.